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Please Help Me....i Am Lost!

scottcolleenb

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scottcolleenb Newbie
scottcolleenb
Posted

:( I am 31 years old and was diagnosed with Celiac disease in 2004. I have been on a pretty strict gluten free diet. Every once in a while I will find something that will have gluten in it. Since Aug 2008 I have been having chronic diarrhea, bloating, abd pain that goes on and off, tired, fatigue and have nausea from time to time. I had 2 colonoscopies and they both came back fine. NO doctors had done blood test to check anything else out. I finally found a doctor that ran blood tests. Everything came back normal but my lipase levels and alkaline phosphatase were alarmed low. What is wrong with me? I am lost and need to find out what is going on...Help me!! :huh:

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ravenwoodglass Mentor
ravenwoodglass
Posted

Have they rerun your celiac panels or done a repeat endoscopy to check if you are healing?

It is also not uncommon for us to have other intolerances. Have you tried eliminating the most likely ones - dairy, soy and eggs?

How much processed foods do you eat? Or foods processed in the same facility as wheat products? How gluten free is your home? If it is mixed you need your own toaster, condiments etc.

scottcolleenb Newbie
scottcolleenb
Posted
  • Author
Have they rerun your celiac panels or done a repeat endoscopy to check if you are healing?

It is also not uncommon for us to have other intolerances. Have you tried eliminating the most likely ones - dairy, soy and eggs?

How much processed foods do you eat? Or foods processed in the same facility as wheat products? How gluten free is your home? If it is mixed you need your own toaster, condiments etc.

scottcolleenb Newbie
scottcolleenb
Posted
  • Author

I had my celiac panel ran and it came back normal per the doc. My middle daughter has celiac disease and I have tried to be very careful. could I have something going on with my pancreas? I need to know what other tests should I be asking my doctor to run. Any Ideas?

ravenwoodglass Mentor
ravenwoodglass
Posted
I had my celiac panel ran and it came back normal per the doc. My middle daughter has celiac disease and I have tried to be very careful. could I have something going on with my pancreas? I need to know what other tests should I be asking my doctor to run. Any Ideas?

Have they done any stool testing? That would be one thing I would ask about. Whether you have something going on with your pancreas I can't answer that but I would ask the doctor about it. Hopefully others will be on soon with some more ideas for you.

Paul1 Newbie
Paul1
Posted

I have a number of lab report places bookmarked and I checked. Found one site that mentioned symptoms for a low A-P:

Open Original Shared Link

Claims it can be decreased in the following scenarios: Hypothyroidism, Malnutrition, Pernicious anemia, Scurvy, Celiac disease, High Vit. B intake.

scottcolleenb Newbie
scottcolleenb
Posted
  • Author
I have a number of lab report places bookmarked and I checked. Found one site that mentioned symptoms for a low A-P:

Open Original Shared Link

Claims it can be decreased in the following scenarios: Hypothyroidism, Malnutrition, Pernicious anemia, Scurvy, Celiac disease, High Vit. B intake.

Thank you for the info.... :D

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dilettantesteph Collaborator
dilettantesteph
Posted

It is possible that your diet isn't as gluten free as you think. You could try a really basic diet of fruit, vegetables, meat and whole grain rice and quinoa for a couple of weeks and see if that helps.

  • 2 weeks later...
sophiejay Newbie
sophiejay
Posted
:( I am 31 years old and was diagnosed with Celiac disease in 2004. I have been on a pretty strict gluten free diet. Every once in a while I will find something that will have gluten in it. Since Aug 2008 I have been having chronic diarrhea, bloating, abd pain that goes on and off, tired, fatigue and have nausea from time to time. I had 2 colonoscopies and they both came back fine. NO doctors had done blood test to check anything else out. I finally found a doctor that ran blood tests. Everything came back normal but my lipase levels and alkaline phosphatase were alarmed low. What is wrong with me? I am lost and need to find out what is going on...Help me!! :huh:

Hello, I just wanted to say that I too had terrible diarrhea for months after going gluten free, my nutritionist advised me to take digestive supplements which had protease, amylase and lipase in them as well as pepsin and betaine. I had to take them for a few months but I soon felt better and little by little my stomach got better and now I only really get diarrhea when I accidently eat gluten. This really helped me, I also take glutamine to help heal the intestinal lining and probitoics for good bacteria. This worked for me, but it did take a while. Now I'm alot better and I can mostly eat without problems. I hope this helps you, I also think seeing a good nutritionist is a good idea too. Good luck and god blessx

Jenny (AZ via TX) Enthusiast
Jenny (AZ via TX)
Posted

It took me a while before I had normal stools, about 8-9 months. I didn't have diarrhea every day but I did have soft stools. I probably should have given up dairy in the beginning, but I didn't. That may have been a problem. I still eat dairy, but I must have healed enough that it doesn't bother me. Also, depending on what the dairy is, I will take a Lactaid. I understand Lactaid will not work if you have a casein intolerance. Also, I had to give up coffee the first few months. It really upset my stomach in the beginning. Peanuts also did not sit well with me.

Since the beginning and actually even before being diagnosed, I have been taking probiotics and digestive enzymes. Actually a lot of supplements. Am now taking thyroid meds too.

You'll get there. Double check everything that goes in your mouth. In the beginning I was eating a rotisserie chicken which I thought was gluten-free, but found out about a month later it was not gluten-free. I simply read the Safeway gluten free list wrong and though deli roasted chicken was the rotisserie chicken.

chatycady Explorer
chatycady
Posted

Some of us celiacs don't get better on only a gluten free diet. You may want to check out the Specific Carb Diet under Leaky Gut and other Food intolerances. Many of us have gotten better on it. It is a different version of gluten free.

Take care. You can get better!

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      IBS-D vs Celiac

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